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There’s a flurry of weirdness going on in my brain

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When people try to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I spent my night with a random flurry of weirdness going on in my brain. My thoughts had no reason and made no sense. I have an overactive brain that just won’t shut up especially when night comes. It just feels so uncomfortable having a torrent of random weird thoughts and questions hitting me every time I try to sleep. I have realized the questions are so odd that most of them are unsolvable.

To go with my busy brain, my body is filled with pain, dizziness, breathing difficulties, tossing and turning, and muscle spasms all disrupting my comfort. A night of sleep… I wish!

But did any of my night time questions or thoughts come to fruition? No. When this happens I pick up a notebook and pen to write everything down. I can guarantee you that when I read them later I’m always thinking omg, these thoughts are so irrational. What the heck is that all about. Then I just let it go. I don’t need any stressful thoughts to complicate my already complicated life.

And because I’m so tired even after a night in bed, the thought of having to get myself dressed and looking presentable in the morning wears me out. If it’s not messy hair, pajama pants and t-shirt doable, it’s too much work.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at hyper speeds and it tries its best to force me to keep up with the pace it sets, but MS has given me a slower pace that requires pitstops and multiple times of rest. Most of the buzzing about that the world wants me to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and extra time to stay in bed. My bed is my friend and keeps me company even in the middles of the day when I need fluffy pillows and moments of quiet. I like friends like that.

Why Does Your Brain Ask Weird Questions When You Can’t Sleep?

I know what it’s like to be chronically tired

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At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night.

I spent the entire time awake through the yawns. I even tried counting sheep but they were no help. I think they actually went to sleep without me because at some point in the night I ran out of sheep to count. Now, here I am still awake at 5:30 AM watching the sun come up and wondering how I’m going to get through my already exhausting day.

Just so you know…

  • I know what it’s like to lie down in the bed at the end of the day only to watch the clock as the minutes tick by with each passing hour.
  • I know about those moments you ‘re about to drift off to sleep when your brain suddenly gets this weird burst of energy and decides to wake up and ponder everything ponderable.
  • I know the feeling of frustration and discouragement when MS seems to be winning the battle with sleep as muscle spasms, tremors and pain relentlessly pulse through your body.
  • I know what it’s like to not be able to sleep even with medications and supplements promoted to help you sleep.
  • I know what it’s like to drag yourself out of bed in the morning so exhausted, and with your muscles so tight, that you can’t move gracefully…or even at all.
  • I know how it feels to stumble into the kitchen to start your day when your entire body feels like you woke up with a hangover times ten.
  • I know how hard it is to put a smile on your face when you at greeted by a cheery “good morning” from your spouse, child or hungry dog.
  • I know what it’s like to think to yourself day in and day out, “If only I could sleep through the night, life would be so much better.”

I know what it’s like to be chronically tired.

I can’t promise you that you will ever feel completely rested when you get out of bed each morning even if you’ve slept through the night, but I can promise you that you will make it through your exhausting day… eventually, minute by minute, step by step.

Hang in there today. You’re doing great, even if you are too tired to see it. Living with multiple sclerosis is truly exhausting but you will make it through your day. Even though you don’t believe it, you will be stronger for it.

Welcome the day and hang in there moving little by little until you’re able to push through the pain, tremors, muscle weakness and even the negative thoughts that have a tendency to show up out of nowhere. It’s going to be a good day. Cheer up. I just know it.

How I do it… living with multiple sclerosis

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When people ask me how I do it, how I get through my day living with multiple sclerosis? I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but I “just do it.”

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”